When Illness Strikes: How to Get the Best Medical Care

We can now research our illnesses like never before. But whom do you trust, and where do you stop? Two women, one a cancer patient who took charge of her own drug research, the other a scientist who faced her own health crisis, show how they found their way

By Laurence Gonzales

"And I mean, I was really scared to wait." In the end, she said, "Okay, I’ve had it. I’m not going to have biopsies forever. I’m too young." Though it showed no sign of cancer, she had her other breast removed.Evidence-based healthcare, then, contains this seeming paradox. Having scientific evidence is, of course, better than not having it. But Kay Dickersin would argue that evidence encompasses more than, say, mortality rates. Psychological factors, such as the debilitating stress from repeated treatments and health scares, can be just as crucial when making a decision. Knowing the evidence is good. Knowing yourself is better. Knowing both is best. Demanding Change Like Kay Dickersin, who is now free of cancer, Darryle Pollack eventually decided to have her other breast removed as a precaution. Both women sought treatments not recommended by their physicians, because these were the paths they felt most confident taking. Being your own doctor can be hard at a time of extreme vulnerability. But believing that you are in control can actually be good for your health. Robert Sapolsky, a MacArthur Fellow famed for his research on stress, points to studies in which two groups were exposed to the same stressful stimulus. One group was led to believe it had some control over the stimulus — a lever to pull, a puzzle to solve — while the other had nothing to do. The stress levels in the first group were far lower, despite the fact that their actions had no real effect. The point was, they were doing something. Dickersin wears a button that shows the yin-yang symbol. On one side of the symbol it says, "Trust me, I’m a doctor." On the other side it says, "Ask me about the evidence." She believes that if the practice of healthcare in this nation is going to change, it will be because people like Pollack demand a better quality of evidence and more control. "I do think the consumer can know enough to understand evidence-based healthcare. And that there’s good research and bad research. And to [learn to] ask the doctor questions." This spring she is meeting with consumer groups, her Cochrane collaborators from abroad, and others to design a course that will teach people how to apply evidence-based healthcare principles on their own. When It’s OverWomen who have had breast cancer often discover that when the surgery is over, the chemotherapy done, the radiation finished, they face an unsettling void. This is essentially what Pollack encountered when her radiation was finished. "They tell you basically when you’re done, well, you can take tamoxifen, and good luck; let’s hope you don’t have a recurrence, bye-bye."She continued her intensive research, at last finding doctors willing to pick up where the others left off: Mark Renneker, a physician in San Francisco who employs a "patient-directed" approach, and Keith Block, whose oncology practice in Chicago combines traditional therapies with diet, exercise, and other techniques. In addition, the broad net Pollack had cast brought her news of a long-term trial being conducted at Finch University of Health Sciences/The Chicago Medical School (now known as Rosalind Franklin University of Medicine and Science). A doctor named Georg Springer, heir to the German publishing giant Springer-Verlag, was motivated to use his own money to develop a vaccine when his wife contracted breast cancer. He had discovered certain antigens in cancer tissues that don’t occur in healthy tissue. By developing a vaccine to produce antibodies against those antigens, he believed, he could stimulate the patient’s immune system to prevent a recurrence of breast cancer. That was the aim of the clinical trials he began in 1974 at two locations in Illinois. According to a 1995 report of results, of 19 original patients, all survived for at least five years, and 11 had survived for between 10 and 18 years. The number of women enrolled in the study eventually grew to more than 100, and the U.S. Food and Drug Administration granted the vaccine approval as a Compassionate Investigational New Drug. Still, the trials remained controversial because there was no control group against which to measure results. In other words, the research would not meet the Cochrane standards. But when Pollack read about the trials, she believed that the vaccine might help her survive.